Filling in some blanks

I realized I haven’t really explained what radiation treatment is like, so I’ll spend a little time writing about that.  There are different kinds of radiation treatment.  What I’m doing right now is called external beam radiation.  While I lie still on the treatment table, with the mattress form holding me in place, a machine rotates around me several times, delivering the radiation to the mapped location of my tumor.  I feel absolutely nothing from the radiation beams.  It takes about seven minutes, less time than it takes for me to change into my gown and get positioned on the treatment table.  At this point, the most difficult thing about these treatments is driving from the suburbs into the city and home again.

There can be skin irritation at the site of treatment, and my radiation oncologist told me this is likely the only side effect I’ll feel.  Some people have fatigue from radiation, but mine is focused on a relatively small area, that I’m probably not going to feel much fatigue from the treatment.

What does fatigue me are the sleep problems I’ve developed.  Three o’clock am seems to be my witching hour.  I wake up, unable to go back to sleep, so I go downstairs and read a little or play a game or two on my computer.  Sometimes, I go back and read your comments to my blog entries, because they’re a source of comfort.  While my resolve remains strong, all the what-if’s seem to come to light at 3:00 am.

As I mentioned in the last entry, I’m going to be doing fifteen of these external beam radiation treatments instead of the originally planned ten, because once my radiation oncologist reviewed my old radiation treatment records, she determined that my current tumor is outside the treatment field from the previous radiation.  There are limits to how much radiation a person can have in their lifetime, and if I had had previous radiation to my current treatment area, I wouldn’t be able to have more than ten treatments.  So, being able to have fifteen treatments is a very good thing.

Another very good thing is that I am able to have the Syed procedure done.  I don’t have all the details on this yet, even after Googling everything I can find on the internet, but, basically, it is another kind of radiation delivery system, named after a Dr. Syed.  It requires that I be in the hospital for three days, over which time I’ll receive five treatments of high dose radiation delivered through needles directly to the tumor.  I have to be in the hospital for this, as the template and needles must be put into place while I’m under general anesthesia — and between treatments, I must lie flat on my back for three days (lifting my head no more than 20%, I’ve read) so that I don’t accidentally shift the needles from the treatment area.  I’m wondering if I’ll be able to use my iPad for blogging and general entertainment during this time.  I’d be lost without it.  I might have to set up a friends and family visitation schedule to keep me occupied.  ;-)  I’m tentatively scheduled to go in for this treatment October 22nd through 24th.

A not-so-good thing that I discovered after talking with my radiation oncologist on Thursday is that the tumor is bigger than originally thought.  Apparently, my gynecological oncologist took a biopsy from the tip of the iceberg.  Instead of being what we thought was a pea-sized tumor, it’s more the size of a prune.  It’s still localized and highly treatable.  I just can’t believe I didn’t realize it was there before the bleeding started.

That’s about all to report for now, except that my treatment time changed from 2:00 pm to 11:20 am, making for a much nicer commute into and out of the city.

Thanks again, for all the support.  It means the world to me.

Today, I’m just a person

Today, I’m just a person who took her son to get his braces off.

Today, I’m just a person who needed a car window fixed.

Today, I’m just a person who sought out a friend for a few quick laughs.

Today, I’m just a person who went shopping for a shirt for her son to wear in his senior pictures.

Today, I’m just a person who drove into the city, while listening to The Curious Incident of the Dog in the Night-Time.

Today, I’m just a person who had another round of about 10 minutes of external beam radiation.

Today, I’m just a person who found out I’ve been scheduled for 15 external beam radiation treatments instead of 10.  This is a good thing.  It means my body is strong enough to have the extra exposure.

Today, I’m just a person who will have the Syed radiation procedures October 22–24th.

Today, I’m just a person who’s too tired to explain the Syed radiation procedure right now.

Today, I’m just a person who enjoyed dinner tonight (and last night!) from good friends.

Today, I’m just a person who’s ready for bed a little early.

Today, I’m just a person.

Don’t take no for an answer

First of all, I want to thank all of you who have reached out to me since by last entry.  I don’t blog to get feedback.  I blog to find release.  But, it’s a wonderful fringe benefit to hear from everyone.

Some of you have asked about the specific dates of my upcoming treatment, and I want to answer that question.  I start radiation on Wednesday, September 5th and finish up on Tuesday, September 18th.  My radiation oncologist wants to review my treatment records from six years ago when I had a broader spectrum pelvic radiation, just after I was diagnosed the first time.  If she sees that the current tumor is located outside the field of the first bout of radiation, then she’ll consider the one-time ratiation treatment that must be done in an operating room.  I don’t know the time table for that.  Additionally, I mentioned starting Tamoxifen.  That won’t happen until, at least, the next appointment I have with my gynecological oncologist in a few weeks, and I don’t know how long I might be on it. Most people have heard of Tamoxifen in relation to breast cancer, but it can be used in GYN cancers too, if, like mine, they are hormone-receptor positive.

I also wanted to mention that I knew something was wrong at least six weeks ago when I started having unexplained vaginal bleeding.  Since I’m post-menopausal and have no uterus or ovaries anymore, I knew this was not normal.  After a week or so of this bleeding, I knew I needed to call my gynecological oncologist to get it check out.  And, this is the important part, so sit up and take notice:  I was told by the scheduler that I couldn’t see my doctor until six weeks later.  I even explained that I was a stage IV endometrial cancer survivor with vaginal bleeding, but she told me, with a very snippy attitude, that I would just have to wait!

No, no, I thought.  That just won’t do.  So, I called back and asked to speak to the doctor’s medical assistant.  I had to leave a message, but she called me back within the hour, set me up for a PET scan in two days, and I was in the doctor’s office within a week after the PET.  That’s when she found the tumor and took a biopsy.  It took a week to get the results back, but she called me herself to give me the news.  In two days, I was in the radiation oncologist’s office making a treatment plan; that was two days ago.  And, now I’m scheduled to begin radiation treatment on Wednesday.  All this before I would have gotten in to see the gynecological oncologist the if I’d taken NO for an answer from her scheduler.

The message I want to leave with all of you is take charge of your health care.  Don’t let a bureaucratic policy dictate how you’re cared for.  Insist on what you need, no matter what.  Don’t let your questions go unanswered.  And, for goodness sake, do your own research, educate yourself, and keep records of every test, treatment, and office note.

I don’t wish my situation on anybody, but if you find yourself in anything like my shoes, dictate the care you deserve, because you deserve it.  Doing so might just save your life.

A bump in the road

There’s no easy, eloquent way to put this.  My cancer has recurred.  It does seem small and localized, and, most importantly, treatable.

Yes, I just reported a clear PET scan, so my announcement may seem odd.  But, it wasn’t until my gynecological oncologist examined me last week that she found a very small tumor in my vaginal opening, just below the urethra, flying under the radar of the PET scan.  Sorry for the indelicate language, but that’s just how it is with gyn cancers.

Next week, I begin a 10-day course of radiation treatment, highly focused just on the spot where the tumor is.  After that, I might have one other radiation treatment that must be done in the OR, with me under sedation.  Additionally, I’ll probably start a course of Tamoxifen, an oral cancer drug that will hopefully mop up any additional little cancer cells that might be roaming around out there.

I’m over five years into remission, and I can’t believe I’m here again fighting the cancer monster.  Yes, I’m concerned, and sometimes at night after everyone’s gone to bed and I’m alone with my thoughts, I feel a little lost.  Mostly, however, I’m just pissed to have to take on this battle again.  Or, maybe it’s more of a skirmish compared with last time.  Either way, it’s not the way I want to be spending my time.

But, there’s no option but to move forward.  So here I move, over this bump in the road.